Aplastic Anemia Home
Navigation Page
New Forum Available

FREE Aplastic Book Preview
 
 


If aplasticcentral has helped you, please help me.
          
          Web Site 
Start Here Aplastic Anemia Basics Acronyms Site Listing Don't Quit BLOG Bruce Story
AA White Paper Short List Medical Dictionary Social Security  Alternative Wellness Aplastic BLOG
Archived AA Forums Archived Patient Stories LINKS Transplants Bone Marrow Disorders Email Bruce
Clinical Trials Medic Alert Patient Stories Add Your Story Nat'l Inst of Health Nutrition

Postings from the Edge <GRIN>

From http://www.lef.org/protocols/prtcl-009a.shtml

A specific natural therapy to restore healthy platelet production is 5 capsules a day of standardized shark liver oil, containing 200 mg of alkylglycerols per capsule. Studies have shown that shark liver oil can boost the production of blood platelets. Studies have also shown the immune enhancement capabilities of shark liver oil (J. Alt. Compl. Med., 1998 Spring; 4 [1]:87-99). As will be discussed later, melatonin may be an especially effective and safe therapy to treat thrombocytopenia.

CAUTION: Shark oil capsules should be taken in high doses for a maximum period of only 30 days, because otherwise too many blood platelets might be produced.

Oh, that it should be!!!!!!

But, hey listen to this one:

Horse Serum???  Rabbit Serum??? Introducing highly toxic drugs like cyclosporine and ATG that wiped out my red blood cells.  I had half way decent reds and whites until they started whacking me with their conventional wisdom treatments for low platelets.  Now I can't make anything!!!!

Date: Sun, 16 Apr 2000 07:24:00 -0700 Reply-To: "Aplastic Anemia and Myelodysplastic Syndrome support list." <AA-MDS-TALK@LISTSERV.AOL.COM> Sender: "Aplastic Anemia and Myelodysplastic Syndrome support list." <AA-MDS-TALK@LISTSERV.AOL.COM> From: Charles Kesner <yacky@USWEST.NET> Subject: Aplastic Content-Type: text/plain; charset=us-ascii

My son was diagnosed with AA in Sept of 98. I have been reading everyone's report and have written a few times. He had ATG and was on cyclosporine for about a year and then refused to take it because it made him gag and he felt sick. He just quit taking it. The Dr. put him on Prograf and it was a lot better. He took it for about 3 months and at this point has quit taking it. We have decided to go with alternative healing since the Dr's don't really know how to treat this dreadful disease. He started having auricular accupunture and natural healing in Feb of this year. He is taking a liquid supplement called seasilver, colostrum and shark liver oil great immune boosters and milk thistle and dong quai. His platelet count in Jan was 75,000 as of April they are 150.000. He will be leaving Thursday to go to Germany to visit a friend for a month. Listen, I work in a pharmacy I see how Dr. use people for guianna pigs. Seek out information for yourself and try different things. They have no idea what to do for AA. They are just doing a regimen that everyone else does. Try to heal your body naturally, forget the chemicals. Let it be the last resort. My son is 20 years old and doing great. Thank the Lord. Connie

THE BENEFITS OF FISH OIL

Fish oil has many names. One of the most common is omega-3 fatty acid or its scientific abbreviation, N-3. N3 fatty acids are found mostly in fish, but are contained in other foods as well. Fish oil is the best food source of these fatty acids.

The primary benefit of N-3 fish oil is the reduction of platelet activity (blood clotting) and plaque formation which in turn can prevent heart attacks. Here's how it works.  The nutritionist at EHCD has me on omega 3!!!!!!!!

Platelets are clot-forming blood cells which prevent excessive bleeding. Overly active platelets, however, may speed the build-up of plaque, a deposit of fatty or fibrous material which narrows a blood vessel wall. Elevated blood cholesterol also contributes to the acceleration of plaque formation. When plaque narrows an artery it is easier for a blood clot to get stuck in the artery and this can cause a heart attack. Because platelets also form blood clots, this is likely to occur. That's why it is desirable to reduce platelet activity and why N-3 fatty acid, fish oil, is beneficial.

 

Always being one to consider what happens if this doesn't work (no, i was not a boy scout, but I sure did work on lots of sales and computer projects that required thinking through alternative strategies), I decided to add this section to Alternative Healings but to keep it separate cause some of it is a little further out from the mainstream.  

However, I did not want to lose track of it, in case my current strategy does not evolve properly, so here are some other alternatives that are being used by others or being investigated for autoimmune related disorders. Many thanks to the ITP group for much of the content.  Appropriate credits to the Platelet Disorder Support Association and its members for an open minded approach to their illnesses. (Most people in AA are staying pretty close to CW (Conventional Wisdom).

Would love to hear from others who have had success (and failures for that matter) with alternative strategies or who have read about them and decided for whatever reason to not try them.  Please post in the forum and I will also transfer them here for the record.

http://www.moducare.com/index.html  - Information below from this site

Author: Anne O'Garra
Source: Lancet, vol. 1, #8644, pp. 943-946, 1989

The immune response has two ways of dealing with foreign pathogens. The B-lymphocytes synthesize specific antibodies called immunoglobulins. This is known as humoral immunity. The other system involves T-lymphocytes, which regulate the synthesis of antibodies as well as direct killer cell activity and the inflammatory response of delayed type hypersensitivity. This system is known as cell-mediated immunity. The T-cells are further divided into helper lymphocytes (Th) and cytotoxic (Tc), also known as suppressor cells. When the T-cells encounter a foreign pathogen (antigen) they further secrete a number of communication molecules called lymphokines, cytokines, interleukins or interferons. These factors further elaborate and direct the immune response to a specific antigen. The whole process is a symphony of many co-factors, which are orchestrated into a sophisticated immune response. The T-helper cells are directly involved in assisting B-cells as well as coordinating their own cell-specific defense. The T-helper cells are further divided into two distinct lines of defense. The Th1 cells promote the cell-mediated line of defense and inhibit the other line known as Th2 cells, which regulate the humoral defense. The Th2 cell lines control the B-cells and inhibit the cell-mediated response of the Th1 lymphocytes. 

A careful balance between these two functions is thus achieved. When one line predominates, there is the opportunity for immune dysregulation to occur resulting in either a hyper-immune response causing an autoimmune disease or a hypo-immune response resulting in an uncontrollable infection such as AIDS or tuberculosis. The Th1 helper cells secrete lymphokines such as interleukin-2 and gamma interferon. Th2 helper cells secrete pro-inflammatory lymphokines such as interleukin-6, interleukin-4 and interleukin-10. Interleukin-1 appears to be released in response to a specific injury and acts as an inflammatory mediator. Interleukin may be over-expressed in diseases such as rheumatoid arthritis and osteoarthritis. Interleukin-1 deficiency is associated with metastatic tumors, nutritional deficiencies and certain autoimmune diseases. Interleukin-6 is associated with pro-inflammatory responses as well as mediating the proliferation and maturation of T-cells. High levels of interleukin-6 have been associated with a variety of autoimmune conditions such as rheumatoid arthritis, Sjogren's syndrome, multiple myelomas, and some cancers such as cervical and bladder. Interleukin-2 is a growth factor for T-cell maturation as well as an inducer of T-cell cytotoxicity and natural killer cell activity. Interleukin-2 deficiency would cripple the cell-mediated immune response and its stimulation would enhance the overall efficacy of the immune system. Immune dysregulation occurs when the two sides of the immune response become imbalanced. 

A greater appreciation of immunotherapies is achieved with a more detailed understanding of the complexity of the immune system.

Blood Type Diet

Dr. Peter J. D'Adamo, in his book Eat Right for Your Type explains that our blood type antigen is the first line of defense in telling whether something in our body is foreign. It is the blood type antigen that creates the antibodies. A chemical reaction occurs between our blood and the food we eat. Some foods have proteins that are close in chemical structure to antibodies that are incompatible for a particular blood type. When we eat these foods our body mistakes them for invaders and pastes them together or glues them to various organs. This mistaken identity enhances the disease process. In addition, individuals with Type O blood often did not inherit certain clotting factors as they evolved. This could result in 'thin' blood or resistance to clotting. The book then offers diet changes for each blood type.

Since ITP is a mistaken antibody blood disease and we need all of the clotting power we can muster, this work could have particular relevance.

Read Taryn' s success story for a personal account.

You can purchase a copy of Eat Right for Your Type in the Platelet Store.

Macrobiotics

In its simplest form, it is a diet that is aimed at restoring and maintaining health by considering the energetic qualities of food. In it’s more complex form, it is a way of life that considers what we eat, see, wear, where we live, and how we communicate. Macrobiotics defines the world in terms of expansive energy (yin) and contractive energy (yang) . Macrobiotic diet theory suggests that we eliminate all food that is processed, fragmented (including vitamins), toxic (nightshade family) or either very expansive like alcohol, or very contractive, like meat. It comes down to a whole foods, non-dairy, vegetarian diet with a bit of fish.

Within the general parameters of the diet, it is adjusted for specific conditions. ITP is an expansive disease (blood literally expanding through the vessel walls). Therefore, in macrobiotic theory, people with ITP should eat foods that are more contractive to bring them into balance. These include foods that are well cooked and a bit salty. They should also eliminate or reduce foods that are expansive. These include all sugars, including fruit, and raw foods. This is a general example. The actual application of these principals varies by individual and is much more complex and sophisticated.

From another vantage point, the macrobiotic diet could be beneficial to those who have ITP because it recommends the elimination of many foods that cause allergic reactions. This reduces the allergic load on the body and reduces strain on the immune system. It also eliminates foods that create strong reactions in the body, like white sugar. This reduces stress and therefore, promotes healing. It eliminates foods that promote free radical damage like white flour or foods processed with nitrites. Stress and the proliferation of free radicals have been linked to causing autoimmune diseases. It also helps balance blood PH. (acid/alkaline level). Most disease conditions are associated with a blood and body fluid level that is overly acidic.

Joan's platelet counts have been holding at 350,000 for several years, due in part, to diet changes.  Read Joan's story for more info.

"My platelets have gone from 100 to 146 in 4 months with no drugs — just a grain and vegetable (macrobiotic diet). It's been a learning experience to eliminate caffeine and dairy and sugar... I have never eaten so much food and managed to loose some weight. Win-win situation. Just wanted others to know this is a possible alternative to drugs."    Shannon  srlight@aol.com

http://www.drweil.com/

http://www.doctormurray.com/

Short Stories

If you have an interesting or unusual story, you can send it to us and we will consider posting it here. It should be 400 words or less. A link to your e-mail address is optional. When you write, be sure to indicate that you want your story published in the Short Story section.

Leonor's Cure  

I was 22 when I first noticed the drop in my platelets during a routine physical in Aug.1997. I had them between 128,000 to 99,000 within a year. I went to see a specialist but it wasn't an extreme low count and I had no symptoms of anything. When I went back again in Oct.1998 they were at 9,000 only to drop to 1,000 in the 5 days I was hospitalized. They started the prednisone, some other steroid, folic acid, IVIG infusion twice and finally the rhogam injection that brought it up to a "safe" 22,000.

The research began and I was convinced that a splenectomy would be the only cure. One month later, at 19,000 the splenectomy brought it up to 200,000! I went back two weeks later and it began to drop again. I started taking herbal teas to cope with the prednisone side effects and a possible end to all this. I was taking about 11 cups of tea a day. The prednisone kept it up but every time I decreased the dosage the platelets went with it. That wasn't working for the platelets but it was great on the side effects. Not all of them though!

Finally my only choices were chemotherapy or experimental procedures. My father started researching and found Dr. Ba. Although I've only spoken to him on the phone, he's helped me so much. He got me started on this tea called Radix Rehmanniae Preparata and some in a pill form. It's a cake like tea that doesn't taste that good. After drinking two cups a day and four of the pills my platelets increased by 10,000 even after I started to wean myself off the prednisone. In May 1999 my platelets are at 70,000. My last prednisone was June2. Now on July 1999 I'm at 258,000. I still take my normal vitamins and now the Chinese pills. I really hate this illness but this was more like a blessing in disguise.... to take better care of myself.

Leonor  

 

WILD CLAIMS FROM NATURAL HEALTH CONSTULTANTS

Thrombocytopenia

Natural Health Consultants

 

Thrombocytopenia means low platelet counts. It is characterized by microvascular (small blood vessels) leaking with platelet aggregation (clumping.) It is most common in adults and is often associated with pregnancy, HIV, cancer, certain bacterial infections, vasculitis, bone marrow transplants and various drugs. Platelets are the small cells in the blood stream (yes, they look like little plates) that initiate the clotting process. When they are damaged they release a substance which dramatically increases platelet adhesiveness and may cause further complications.

The cause of this condition is still unknown though Thrombocytopenia of unknown origin (idiopathic) is believed to be an autoimmune condition.

Addressing this problem first involves fixing the condition that caused it, if possible. If it is idiopathic refer to the Immune Dysfunction page for some ideas.

A few substances yield good results, too.

Melatonin at 10 to 40 mg per night raises platelet counts. Some people cannot tolerate more than 3 mg. 

Alkylglycerols are also highly effective in high doses. 10 capsules per day of Alkyrol 500 mg is the usual dose. Limit consumption to 30 days to avoid overproduction of platelets.

According to Bradley Bongiovanni, ND., the cell salt called Ferrum Phos 6X at 5 pellets twice daily on an empty stomach is "renowned" for raising platelet counts.

Melatonin study from Scientific American

Across the nation, insomniacs, the sick and the simply curious are gobbling up melatonin. The hormone is being touted in the popular press as a natural way to get a better night's sleep, to improve one's sex life, to live longer and to fight the ravages of AIDS, Alzheimer's disease and cancer, among other afflictions.

Boosted by cover stories in Newsweek and by a rash of uncritical books, melatonin seems to have taken over from beta carotene as pop medicine's Next Big Thing. (Beta carotene, another natural substance, recently disappointed enthusiasts when a clinical trial found that it not only fails to prevents cancer in smokers, but may actually promote it.)

A backlash against melatonin hype is now under way. Critics warn that the doses of melatonin commonly sold in health food stores--which raise levels of the substance in the blood 30-fold higher than their normal peak--could be dangerous for some people. And many researchers and fad-watchers point out that the more startling claims being made for the substance are unsupported by studies on patients. They are, rather. starry-eyed extrapolations from experiments conducted on rats and mice. These animals differ from people in many ways, especially as regards sleep, the one aspect of human physiology that melatonin clearly affects.

Richard Wurtman, a researcher at the Massachusetts Institute of Technology, has spent years studying melatonin and its biological effects. He has described some of that work in a Scientific American article ("Carbohydrates and Depression" by Richard J. Wurtman and Judith J. Wurtman in SA, January 1989). Wurtman says there is "no controversy" that the substance, in doses of a fraction of a milligram, can induce sleep and shift the sleep cycle. Summaries of his findings appear in an M.I.T. press release.

But Wurtman, the named inventor on an M.I.T. patent covering the use of melatonin for controlling sleep, says there is "no evidence" that it has any effect on human life expectancy, and "only marginal" evidence that it promotes longevity in mice. Wurtman further maintains that health-food store doses of melatonin might diminish sex drive. He also denounces as "wicked" the suggestion that people with cancer or AIDS should take the hormone: Wurtman thinks melatonin is as likely to worsen those conditions as to ease them.

Wurtman is not the only researcher criticizing melatonin mania. In an article published in Cell, Steven M. Reppert and David R. Weaver of Harvard Medical School recently described as "seriously flawed" an experiment by Walter Pierpaoli, William Regelson and others that kindled hopes melatonin might extend life.

The investigators prolonged the life of elderly mice by giving them transplants of tissue from the pineal gland (an organ that responds to melatonin in the bloodstream) taken from younger mice. Pierpaoli and Regelson hypothesized that the transplanted tissue was more responsive to melatonin and somehow revitalized the old mice. But according to Reppert and Weaver, the mice used in the experiments have a genetic defect that means they cannot make melatonin; attributing the effect to the hormone is therefore "absurd."

Regelson and Pierpaoli's book "The Melatonin Miracle" (a chapter outline is available) is one of the most unrestrained of the current crop. Regelson asserts that he and Pierpauli wrote their book because pharmaceutical companies are likely to drag their heels on melatonin research, owing to the difficulty of patenting a substance found in nature, whereas "I am 70 years old and I have a time constraint."

But Fred W. Turek of Northwestern University, writing in Nature, points out that "not one study" in humans supports Pierpaoli and Regelson's claim that, for example, melatonin helps to prevent heart attacks. Victor Herbert and Ruth Cava of the American Council on Science and Health caution that children, women who are nursing or who may become pregnant, and people who have immune-system disorders should avoid taking the hormone because of uncertainties about its effects.

The Food and Drug Administration is collecting occasional reports of ill-effects from melatonin, but says it will not control the compound unless a study clearly shows that its consumption is harmful. As for the promised benefits of melatonin, a good deal more research is needed to demonstrate if it truly has uses beyond a sleep aid. See, for instance, a sober assessment by the Mayo Clinic.

Whether established scientists are willing to take on the task is unclear. The National Institutes of Health spent $4.8 million in 1995 on sleep studies and investigations of the effects of melatonin, according to budget documents. But, says Andrew A. Monjan, chief of neurobiology at the National Institute on Aging, the agency "has not received meritorious research grant applications" to investigate other uses of the alleged wonder hormone. --Tim Beardsley, staff writer

 

Mycoplasma

Natural Health Consultants

 

What do Gulf War Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Atypical Pneumonia, Rheumatoid Arthritis, Multiple Sclerosis, ALS, Lupus Erythematosus (or other autoimmune diseases,) AIDS, and Cancer plus many others have in common? They are all associated with a strange pathogenic organism called a mycoplasma. Mycoplasma species are either the cause, a co-factor or an opportunistic germ which many studies have associated with these conditions.

These strange organisms are classified as prokaryotes, somewhere between bacteria and viruses. They are cellular organisms which lack a true nucleus or nuclear membrane. Instead of cell walls (no gram + or -) they have a plasma membrane which is sticky and allows them to attach to your body cells. Once they attach to your cells they feed off of them. They can even do something bacteria usually don't but viruses do, and that is enter your cells. One of the reasons that they attach to your cell membranes is because they are rich in cholesterol. Cholesterol, along with the amino acid L-Arginine, is mycoplasma's favorite food. They even feed off the waste products of your body's cells.

Mycoplasma have been generally unrecognized by medical science until recently because of their peculiar characteristics. Certain species can attack any cell in the body and when they do they alter their appearance and structure, which makes them difficult to detect. They can even enter the cell itself like a virus which means that ordinary tests don't detect them as they would an extracellular organism. Multiple species (see the chart below) of Mycoplasma may inhabit the same person producing a confusing array of overlapping symptoms.

The Main Human Mycoplasma Pathogens
Pathogen / Implicated Disease 

Mycoplasma genitalium Arthritis, chronic nongonococcal urethritis, chronic pelvic inflammatory disease, other urogenital infections and diseases, infertility, AIDS/HIV
Mycoplasma fermentans Arthritis, Gulf War Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Lupus, AIDS/HIV, autoimmune diseases, ALS, psoriasis and Scleroderma, Crohn's and IBS, cancer, endocrine disorders, Multiple Sclerosis, diabetes
Mycoplasma salivarium Arthritis, TMJ disorders, Eye and ear disorders and infections, gingivitis, periodontal diseases including even cavities.
Mycoplasma hominis and Ureaplasma urealyticum Two mycoplasmas commonly found in the urogenital tracts of healthy persons. However, over the years, the pathogenic roles of these mycoplasmas have been proven in adult urogenital tract diseases, neonatal respiratory infections, and a range of other diseases usually in immunocompromised patients.
Mycoplasma pneumonia

 

Pneumonia, asthma, upper and lower respiratory diseases, heart diseases, leukemia, CNS disorders and diseases, urinary tract infections, Crohn's and Irritable Bowel Syndrome, autoimmune diseases.
Mycoplasma incognitus and
Mycoplasma penetrans
AIDS/HIV, urogenital infections and diseases, Autoimmune disorders and diseases
Mycoplasma pirum

 

Urogenital infections and diseases, AIDS/HIV

 

They can cause a bewildering variety of problems which can exist singly or in combination. Worse, they can come and go at any time. These can range from a simple sore throat to neurological problems, gastrointestinal problems, breathing problems, musculo-skeletal pains and problems and so on, depending upon what they have attacked recently. They even make pain more intense by increasing the sensitivity to Substance P, the neurotransmitter that signals pain messages to the brain. 

Since they love cholesterol, it is thought that they are attracted to the cholesterol in the arteries and may contribute to vessel rupture. They can even attack the white blood cells themselves either neutralizing them or making them hyper responsive. They can exist in tumors where they make them more aggressive and likely to metastasize. They are theorized by some to be a co-factor in AIDS.

Apparently the body tries its best to eliminate these pathogens and in the process does collateral damage to body tissues, which is theorized by some to be the source of autoimmune conditions.

Mycoplasma can be detected by certain tests which your doctor can order. When detected it is treated in conventional medicine with long term antibiotic therapy since the organisms are slow growing. This can cause problems as the organisms can get resistant plus the therapy can cause dysbiosis, or altered gut flora, a source of many other problems ranging from yeast infections to diarrhea. Plus, relapses are quite common.

There might be a better way.

A collection of Amazon rain forest herbs has been formulated to deal with Mycoplasma, called Myco +. By all accounts it is deadly to mycoplasma.

Alternatively, Olive Leaf Extract is said to be highly effective against Mycoplasma.

Lactoferrin or Laktoferrin with Colostrum may also be useful.

The Jaffe-Mellor technique trains the body to quit attacking itself and is purported to be quite effective in autoimmune conditions. 

 

 

 


 If aplasticcentral has helped you with aplastic anemia, please consider making a donation.  Thanks!  Bruce